Most of us have some fear of death. But, the Mom in our story today didn’t just fear death. She particularly feared the dying process. Louise had worked as a nurse and seen some horrible family fights at the end of life. And, she had strong feelings about what she wanted (and didn’t) when it came to end of life care. She was terrified of it going wrong.
(Not) Talking about Death
Louise had a choice. She could avoid all talk and thoughts about death. Many people do this. More than half of people in relationships are unaware of their partners’ end of life wishes. We live longer, thanks to healthcare advances, and are more distant from death today than ever before. As one author shares “we’ve fallen out of practice with the everydayness of death and dead bodies”. While we’re surrounded by death on the news and curious about it (just look at the popularity of True Crime), we rarely discuss it on a personal level.
Those who deal with death and dying every day see the problems this causes: “Because people increasingly shun discussion of dying, their first-ever real discussion of end-of-life preferences is often held near the point of death, with attendant anxiety, sadness and family tensions. This is less than ideal if a consensus is to be reached on what is in the best interests of the patient, or if disagreements are to be expressed safely and explored sensitively.”–Kathryn Mannix, palliative care physician.
Facing the Fear of Death and Dying
But, Louise chose to go the other route. Her experiences as a nurse taught her the dangers of ignoring death. She had seen quality end of life care with actively participating patients and families. On the other hand, she had seen the chaotic nightmare dying could be without planning and proper management.
So, Louise decided to face her fears. She contacted EasyLiving to figure out how to go about making a plan, discussing her wishes with her loved ones, and making sure things happened as she wished. She had a lot of concerns about end of life care. And, she was especially worried that her family would not want to talk about it. Louise feared that some of their old family conflicts would arise.
Working with an EasyLiving Care Manager: End of Life Planning
End of life planning is about more than legal documents. That’s not to say the legal documents aren’t vital. When you work with a care manager, they’ll always find out if you have executed key advance directives, estate and end-of-life planning documents. They can refer you to a qualified attorney to create or update them.
But equally importantly, the care manager delves into your wishes and how to plan to be sure they’re communicated and carried out. They also help you understand pitfalls, what to expect and more. You don’t need to be afraid of conversations about dying–a care manager gives you the opportunity to discuss all your feelings with a professional in an open, respectful environment. And, even better, you get a sounding board who has extensive knowledge of end of life care and the healthcare system.
End of Life Care Planning=Life Care Planning
Louise was able to express her concerns and outline an action plan with the care manager. Living and dying with quality of life (whatever that means to you) is about so many things. For example, Louise worried about her dog. Not being able to be with her dog was one of her biggest fears. And, then she agonized over what would happen to him when she was gone. As they discussed options for various stages of Louise’s later life, the care manager helped her tailor those plans to this concern.
She had worried about being forced to go into a facility where she couldn’t have a dog. They set up plans (and created a “letter of intent” to her loved ones) to bring care into the home. The care manager helped Louise explore the finances of this and resources to help. She suggested some areas for Louise to get help with now to help prevent the very thing she most feared. She also researched some care facilities that would accept Louise’s dogs should her needs reach a certain level. And, they worked with Louise’s attorney and family on plans for the dog if Louise died first.
Care managers know the key to good life care planning is in the little things. Where things most often go awry is overlooking the little things that mean so much to all of us. As they worked together to set up care at home, Louise was relieved to learn about EasyLiving’s care planning process. She was pleasantly surprised when they asked about her background and preferences. This was the kind of thing that she tried to do personally as a nurse, but she felt was too often left out.
An Unusual Gift for Her Family
Her care manager then helped facilitate a family meeting. Louise’s family’s reaction was almost the opposite of what she’d feared! They were pleased she was facing these issues. One of her sons was uncomfortable at first and looked upset. But, the care manager helped engage everyone in the discussion. As he saw what the meeting was (and wasn’t), he opened up about some of his concerns. The care manager expertly navigated the different personalities and feelings involved. She also made it clear that this should not be a one-time discussion, but a process. Things would inevitably change and they would have support.
The meeting uncovered a lot of assumptions various family members had. Louise and her kids were surprised at what came out. But, they were thankful this hadn’t come out in the middle of a crisis. It gave them time and space to make plans that were realistic.
For example, one family member had assumed they would end up handling Mom’s paperwork and finances while another would possibly move in with Mom. But, neither Mom nor that family member wanted that. They also had no idea what Mom wanted when it came to end-of-life wishes. And, these were the very people who would likely have been making the decisions if Mom was unable!
The process was a gift for both Mom and the family. It may not have always been the most comfortable situation, but Louise felt relieved she had done it. Our anxiety tends to be worst fearing the unknown.
Medical Advocacy
Both Louise and her family were also pleased to have the care manager as an ongoing advocate. Even with Louise’s knowledge of the medical system (or maybe especially because of it), she worried about all that could go wrong. While her family now understood her wishes, she wanted them to have support. And, she wanted an expert who could deal with any bumps along the way.
During the assessment, the care manager uncovered some areas to improve Louise’s safety and well-being proactively. This included a medication review, setting up services and getting her records organized. She helped get these tasks done and communicate among Louise’s “care team”. Louise and her family also decided to avail themselves of EasyLiving’s crisis interventions services. It was a huge relief to have her concerns answered and know someone would be there to assist at any time.
